Hi all

I have never written anything on this site before but see a lot of help and support offered

As you all know, we suffer in different ways and hard to actually pin point what is fibromyalgia and what is another complaint. I find it quite hard sometimes to say "this is my Fibro" OR is it something intirely different!

I can honestly say I have suffered on and off since I was 11yrs after a massive viral infection then peaked at 17/18yrs. It took 7yrs of consultant appointment and long stays in hospital before they would 'label' me, in the end my team of consultants narrowed my condition to Fibromyalgia not without a lot of heartache on the way for myself and family.

I manage my condition very well and control the flares with pain killers and anti inflammatory. Over the last 2 years my dose of amitriptyline has risen to 100mg every night. I now wake up between 2 and 5 times a night. Sometimes on regular one hour intervals. I used to b completely the opposite; sleeping all day and night. However now I cannot sleep without waking up. I always go back to sleep shortly after then to wake up again. It's as if a lightbulb comes on and I am sitting up in bed wide awake. Does anyone suffer like this?? I don't think I have had a full undisturbed night sleep in months. I no longer sleep in the day.

Any thoughts or experiences on this matter would b hugely appreciated!!

Kind regards

Claire x

8 Replies

  • Perhaps your body has become too used to the amatryptaline have you been to see your gp and see if they can give you an alternative, I am on 75mg of dosulepin at night been on it years and I sleep well with only the odd night of wakefulness I tried coming of it and immediately stopped sleeping so I went back. Apparently according to a liver biopsy I had my liver doesn't metabolise alcohol or meds well so I only need low doses and don't build up a tolerance.... Finally something in my favour

  • Thank you! I have suspected it could be the amitriptyline rather than the Fibro. I would like to know whether people are having these restless nights without taking amiptriptyline?? Been on them so long it would b a strain to change, apart from my sleeping pattern it controls the condition quite well! Always feel like I can sleep 24 hours but what else is new, ha!

    Kind regards

    Claire x

  • I have gradually got used to a strange sleep pattern - it probably is enough for me , I sleep from 11.00 till 2.00 then wake to sleep intermitantly and when the pain overcomes me I get up any where between 5am and 7am during the day I have what I think of as a power nap at about 1.30 for an hour and maybe a doze at 4.30- 500pm so all in all 5/6 hours but all over the place. Doase it matter well no I rest when I need it I hasve totally given up on a full nights sleep. xgins

  • Thanks Gins, a full night sleep maybe a thing of the past! May I ask whether you take amitriptyline at night?

  • Yup, been there, and then there are the nights where I get no sleep at all, ussed to it now. But the hourly wake up is so annyoing when it starts and that was happening when I was not on meds. I hope you get it sorted soon. When it gets bad for me I take a flask of camomile tea up with me, sometimes it helps xxxxx

  • I found I slept like a log on amitriptyline but then my body got used to it and I started waking up too often so had to up the dose. After 7 years on it I'd had enough of all the side effects and was weaned off it with support from a nutritionist. Now I rely on herbal supplements but its all trial and error. I don't sleep really well anymore but my GP gave me a sleeping pill which I take only 2 3 times a week just to give me some respite. I'm ok with this approach for the moment but do miss normal sleep.

  • My GP wanted to lower my 100mg a night of amitriptyline but as my flares are few and far between at the moment I don't want any of my medication changed! Xx

  • So I can put this down to my Fibro and not the amitriptyline. It's awful the hourly wake up, drained all the time, it's as if I am running on auto pilot. Maybe I can go back to my GP and ask if there is anything he can recommend also. I will definitely try the camomile tea tonight because my mum drinks it...what I would give to have a full nights sleep?? Xx

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